News

Jonathan W. Mink Elected President of Child Neurology Society

Tuesday, August 30, 2016

Jonathan W. Mink, M.D., Ph.D., chief of Child Neurology at Golisano Children's Hospital, will lead the nation's largest organization of child neurologists.

Mink, who is also Frederick A. Horner, MD Endowed Professor in Pediatric Neurology, was voted president of the organization by fellow pediatric neurologists from around the U.S. He will assume the position of president-elect following the annual meeting of the Child Neurology Society in November.

The Child Neurology Society is a non-profit professional association of 1,300 pediatric neurologists in the United States, Canada, and worldwide who are devoted to fostering the discipline of child neurology and promoting the optimal care and welfare of children with neurological and neurodevelopmental disorders.

“It’s a tremendous honor to be elected,” Mink said. “Child neurology is a changing field. There is a real opportunity to leverage our increasing diversity to reach out to students, trainees and patients in a way that we couldn’t before.”

In addition to Mink’s clinical practice and research, he directs the Division of Child Neurology in the Department of Neurology and is associate director of the Child Neurology Residency Program. He also serves on the executive board of the International Child Neurology Association, on the board of directors of the American Neurological Association, and the executive committee of the American Academy of Pediatrics Section on Neurology. He is a member of the National Advisory Neurological Disorders and Stroke Council of the NIH, a medical advisory to the Batten Disease Support and Research Association, and is also an associate editor of Neurology. He served as chair of the Child Neurology Society’s Scientific Program Committee from 2013 to 2015, where he and Schor collaborated to plan the 2014 and 2015 Annual Meetings.

“Nina was a terrific president of the Child Neurology Society. She’s a born leader, and I have learned some lessons on how she fulfilled her duties,” Mink said. “I think it’s tremendous for the University of Rochester. When I started here, there were four child neurologists. Now there are 15, and our residency program is one of the top-rated programs nationally.”

Mink trained in Pediatrics Neurology at St. Louis Children’s Hospital. He received his M.D. and Ph.D. from Washington University.

Mink is nationally recognized as a movement disorders specialist. He’s known for his research on Tourette syndrome and understanding brain mechanisms involved in the control of movement, along with disorders that cause involuntary movement. His research also includes clinical trials that impact the function of children with movement disorders.

Mink will serve one year as president-elect, two as president, and one as past president.

Singh, assistant professor of Ophthalmology and Biomedical Genetics, will use the $60,000
grant to create a human model of Batten disease (CNL3) using patient’s own cells. The project may lead to better understand the disease mechanisms, aiding in the
development of drug therapies to preserve vision in affected patients.

Investigating Batten Disease

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Workshop on JNCL Clinical Trials Outcomes

Wednesday, December 18, 2013

There are a number of recent and ongoing clinical trials in Batten Disease. Most of these are focused on asking if these potential new treatments are safe. After safety studies are completed, the next stage of clinical trials research is to learn if these or other interventions are effective. In order to answer this question, we will need a way to measure whether or not an intervention actually makes a meaningful difference in disease course.

Therefore, the URBC hosted a workshop titled, Outcome Measures and Infrastructure for Phase III Studies in JNCL (December 6-7, 2013). The workshop brought together experts in the clinical features of JNCL, experts from other fields (clinical trials in rare diseases, statistics, etc.), and Batten family representatives. Each expert was invited to bring trainee to accompany him/her, so that we can continue cultivating the next generation of researchers who are focused on Batten Disease. Our goals were to:

Identify possible outcome measures for future clinical trials

Develop a roadmap for further research to test and refine outcome measures

Strengthen research collaborations to support outcome measure development

The University of Rochester Medical Center is currently recruiting subjects with JNCL for a clinical trial. This research study will focus on evaluating whether an investigational drug is safe and well tolerated in children with JNCL. Mycophenolate mofetil (also known as Cellcept) is a medication that suppresses the immune system. The study is 22 weeks long with a total of 8 in-person visits and 4 telephone contacts. Four visits require travel to University of Rochester Medical Center in Rochester, New York, and four visits are with your child’s local physician. Four contacts take place by telephone. Travel costs are covered by the study. Children enrolled in the study will take mycophenolate syrup twice a day, and will have blood drawn at each study visit to monitor safety.